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Hi Neil, in our case this is a hard one:
Brief history: Jan 2002 Lionel still at work though struggling.
Jan 2002 diagnosis of early onset Alzheimers made and recommended stop work.
Excelon started working up to maximum dosage by early 2004
My point being we do not know what difference Excelon has made as life changed when diagnosis made.
Lionel now can no longer walk on his own, or dress himself.
Would this have been the progress without drugs - who can say.
Hope this helps, Connie

We were dubious, but the neurologist talked us into trying her on Exelon. That she tolerated OK.

As her dementia got worse, she was started on Memantine in addition to the Exelon.

Her dementia continued to worsen. Would it have gotten worse faster without the drugs? I don't know.

When agitation/aggression became an issue, she was started on Seroquel, which helped the behaviors. When the agitation/aggression got worse again after some months, there were many changes of medication, short stays in four hospitals, and she ended up in a new home. (The assisted living place where she was before could no longer handle her, so we moved her to a specialized Alzheimer's home.) At this point we have dropped the Exelon and Memantine (as of about March). There was some concern that they were contributing to the aggression, although doctors were at odds over this. And since at best they may have been slowing the progression of the disease, it just no longer seemed worthwhile.

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Karen & Connie - much thanks for that, it has given me some insight into this.

I did receive some positive stuff from drug companies, and one (which was a DVD) did indeed give the views of people on the drugs/their carers/partners etc.

Of course, being promotional, each story was positive - I'm not knocking that, but I find that it would give me a 'clouded' view of the overall picture, therefore I have also wanted to here negatives too (please don't think me a sadist here - I'm not wishing it on any individuals, but I do want to hear this too).

It's intersting to me to think 'what would happen if drug treatment had not been administered' as pointed out... would the process have been more rapid? Behaviour changes worsened etc. - I guess there's no way of knowing in hindsight - what would one have as a comparison othere than other individuals (who may tolerate something better/worse than another, therefore it wouldn't be a valid comparison).

I would like to thank you both for taking the time and trouble to share this with me and wish you and yours all the best.

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Hi Neil
I have just found this post. I am 49 with Early Onset Alzheimers. I tried Exelon and it made me very ill. I am an asthmatic and my asthma became uncontrollable. It also caused problems with my bladder (frequency, nocturia) so had to stop after two weeks. I have just started on Ebixa in the last week and I am starting slowly so will take me a month to get up to therapeutic dose. If you reply to me in the next few months I will keep you posted on "an insiders" point of view with regards this medication.
Take care Jeanette

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Hi Neil
I have just found this post. I am 49 with Early Onset Alzheimers. I tried Exelon and it made me very ill. I am an asthmatic and my asthma became uncontrollable. It also caused problems with my bladder (frequency, nocturia) so had to stop after two weeks. I have just started on Ebixa in the last week and I am starting slowly so will take me a month to get up to therapeutic dose. If you reply to me in the next few months I will keep you posted on "an insiders" point of view with regards this medication.
Take care Jeanette

Many thanks for your reply Jeanette - I really do appreciate your taking the time to reply to someone who might appear to be 'merely curious' rather than actually 'going through' these issues on a personal level.

I would very much like to know how you progress with this.

As to the asthma, I'm on medication for that myself so I can empathise to some degree what it's like when other medication can exacerbate the symptoms (although touch wood I've not been troubled with it for quite some time now).

You see, it's your experience and that of other people that means more to me than the research... I know these things 'don't work for everyone' and I do very much want to hear what it's like for people... the positives and the negatives.

I can chat with colleagues about what is 'the best drug' for anything... but at the end of the day, I want to know what it's like for the individual experiencing the drugs use.

Example: One inhaler I had for asthma called 'Duovent'... I was on that for some time.

If I used it regularly (i.e. when the warm weather/high pollen impacted on the condition) I would get headaches, dry mouth, tickly cough etc. etc. - it wasn't the drug for me, so I saw my G.P. and got it changed - no problems since!

Sorry if I appear to have 'gone off at a tangent' - my point is, that through PERSONAL experience, I know what drug isn't right for me.

Hope this makes sense.

Once again, many thanks - it is very much appreciated... any input on these issues will help my understanding and also will be of immense use to me in my chosen career.

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My mum who is currently 59 has been suffering from severe progressive dementia for the past few years. She was on Aricept, then Exelon, the Aricept again over the past few years. No obvious progress was observed, and eventually due to frustration and hopelessness, her Aricept was stopped while waiting to start Ebixa. During the period when she was on no medication, there was a drastic change in her. She became pathologically depressed, won't eat, literally sobbing all her waking moments, can't dress herself, constantly crouched in a corner, grieving for her parents who died many years ago, not even recognising who I was. It was a very sad picture. She became extremely paranoid and violent. She was then started on Ebixa, and within a month, she was almost back to her cheerful bubbly self! She started eating, stopped crying, able to look after herself better. The only thing that didn't improve was the memory. She is also on seroquel to help control her depression and aggression. She's been on Ebixa now for over 6 months. Things are generally controlled but not perfect.

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Hello Neil,
My wife was diagnosed (VaD/AD) mid 2001 but was not prescribed anything until
some 6 months later I managed to get the consultant tell me that there was a drug that could slow down the deterioration of her condition but that she was not able to prescribe/finance it. For the following two years I was able to buy the REMINYL(Galantamine) that she mentioned. You might be interested to know that half a year after we started the drug the consultant asked me to find out whether the drug had any effect by giving it a "Medicine Holiday" of two weeks. I did start withholding the Reminyl but after three days there was a distinct change for the worse in a couple of the behavioural changes that had started at that time. I stopped the holiday immediately. Last year the consultant started providing the Reminyl which my wife still takes. Hope the above is helpful.
Ol'Dutch

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Hi Derth,
When my Mom was diagnosed she was having severe episodes of not knowing my Dad, being very biligerent and hallucianting. That was 1 1/2 year ago. She was put on Aricept and Reminyl. We saw changes within a month. She tolerates the medication very well and it has slowed the progress of her Alzheimers. She now only has an episode every 2 to 3 weeks. The psychologist told us that if it gives her a year more before having to go into full time nursing care, that is a huge savings. It might be distasteful to think of it in monetary terms but if that money can go to her long term care later on, then it was worth that time on the drugs.
Good luck,
Debbie

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Wow - what a response... like buses... none for ages, then three come at once

Seriously though - Many, many thanks for your response ailyn2611, Ol'Dutch and rummy - the info you have kindly shared is very interesting - especially the 'medicine holiday' you mention Ol' Dutch... sorry if my curiosity here appears insensitive, but a 'what if...' example is the kind of thing I do want to know about.

I've worked for the NHS for quite some time, and at one point I used to say to myself "Why the heck does Doctor Suchandsuch keep messing about with medication when 'person x' appears to be doing well?'

I now know that there's a lot more to it than just giving a tablet out, and there's tolerance/contra-indications/side-effects etc. etc. to consider, plus the person's perceptions as to the efficacy of the medication they are taking.

As I said, although a Student Nurse (hopefully qualified next April, touch wood) I would rather have the experiences of folk who deal with these issues daily, rather than being informed by lecturers at University etc. - don't get me wrong, research is of course invaluable and I wouldn't be so far into my training without acknowledging it...

But examples provided by the kind people of this forum mean more to me than that, and aid me in my interests towards working in this area.

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My mother was started on Aricept Jan 2001. At that time she also received Risperdal and an anti-depressant. As the disease progressed, we tweaked the meds, changing the time she took them, switching one anti-depressant for another etc. But she stayed on the Aricept until Feb 2004, when, after a great deal of gentle but relentless pressure, she was put on Ritalin to deal with constant staying abed & evil, nasty moods. At this point the Aricept was switched with Reminyl.

Mother was happier & pleasant for a while then things started going downhill again. Much more whining & pushing & moaning on my part & Feb 2005 she started on Ebixa. She is about a stage 6a right now and the Ebixa was developed for late stage AD. It certainly has helped her enormously, much better spirits, much happier..

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Hi Joanne
Ebixa was actually developed for middle to late stages of Alzheimers and they are currently trying to get it approved for early stages too. I have early onset alzheimers and have been on Ebixa for three months. I was initially sceptical because the focus was on middle to late stages but have been pleasantly surprised with the results. It has helped my memory and my thoughts are less muddled and also my mood has improved. I wondered whether it really was the Ebixa and also went on a "Medicine Holiday" as described by Ol'Dutch (below) just over a week ago, but I have really noticed a difference and last night mistook my young 11 year old daughter for someone else. It gave me such a fright I have started the Ebixa again today. I know this medication does not work for everyone but it has for me.
Jeanette

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Jeanette - I can't even begin to feel how frightening it must be for you to have the experience you mentioned whilst on the 'holiday'... that's the thing that would worry the hell out of me, to actually have 'insight' but also to have no control... I'm glad things are working okay for you and thanks once again for posting that info. here.

Joanne... you mention Risperdal and Ritalin... can I ask were there any side-effects that you observed? Just me being curious.
I'm glad your Mother is doing well and is happy - and all credit for you for 'whining & pushing & moaning'... I often do that, because it's often (unfortunately) the only way to get anything done in this world.

All the information in this thread is not only of use to me in practice, it also gives me 'insight' into how the drugs are applied and perceived by the people using them/carers... plus, if ever anyone asks me about the 'Hands Off Dementia Drugs' campaign, I can say, "Well, I've had feedback on the drugs... and someone said that..." and can talk about the experiences folk have shared... especially the 'Medicine Holidays' for any doubting Thomases who ask for proof that the drugs are effective.

I've also been in correspondence with Mrs. Christine Bryden, the author of the wonderful book "Dancing With Dementia", and she has very kindly allowed me to quote her experiences from the book in order to highlight the importance of the treatment.

Repeating myself but who cares, because I want to say a BIG THANK YOU once again to all who have replied to this thread - it is very, very much appreciated!

Many thanks Nada - I think that this is the best place for it, because it highlights people's perceptions of thier own treatment and those of carers... and to a Student Nurse like myself I feel it's important to know about this stuff rather than the 'bumph' that's available in print.

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Dad had and still appears to have this even now every now and again. Thats why I get so frustrated when people say 'Oh your dad has alzheimers, at least he won't be aware of what is happening to him'. Please somebody post that up as something folk should not say to a carer!

Maybe some don't know whats going on, but the most horrifying thing about Dad having this disease is that he was so aware of what was happening to him and i believe, is still aware but now it is even worse because he can't tell people that he knows. He's in there trapped while his body behaves in ways he can't control, he laughs when he means to cry, he yells when he means to just say something, he tries to put a biscuit in his mouth but instead puts it on his cheek and knows that he has missed, his tongue twists around in his mouth betraying the words he is trying to say to me and then he gets lost in the confusion in his head and has to sit there with a frown while he tries to work out how to get back again.

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- they are in the land of the fairies
- you must try and forget them now, they are just shells
- leave the caring to others and get on with your own life
- you are imagining they are there because you want them back

I challenge that stereotype on a regular basis believe me... you've forgot the following too Brucie:

They're always wetting themselves... but they don't know they're doing it.
They're like babies.
You can't have a conversation with them.
WHat's the point of visiting... they won't remember you've been anyway.

Yep... so easy to depersonalise a group of people... let's just re-categorise them eh? Here's a new species: Dementio-Sapiens.

I'm not aiming for a 'lol' here folks believe me, I HATE all that... I'm just highlighting the issue further.

As for the 'empty shell' comment... that's one that I ABHOR believe me!

I've spent lots of time with these 'empty shells' and shared many stories and life experiences... I could write a book on what I've learned from these good people too... but, who'd want to read it out there in the 'We've already picked a popular stereotype so don't give us any more info' world.

I'll tell you who... a lot of people who are interested, because they are having their views challenged!

I for one will continue to challenge those views as do many others I know.